Education

It’s the last day of IC awareness month and I feel that since I was pretty much out of commission for the past 60 days and didn’t get to implement any of my fun awareness projects like I usually do, I should say something today before it’s all over. Well, the awareness projects are never over I suppose…just the extra push we get on them from having our very own month dedicated to making people learn shit about it whether they want to or not. So I shall go on and on today about just what I think we’re capable of…because honestly I know that everyone who wants to get involved in raising awareness is capable of making this whole entire world listen to what we have to say. At least, that’s how I look at it. I guess at the end of it all I wish that’s how other people looked at it as well. But, I know that not everyone has the confidence to go against their families or friends or even coworkers that tend to walk around saying that this condition is bullshit. I didn’t know if I had that confidence in the beginning either but I learned what worked and what didn’t work over time. I have developed tactics that work for me when it comes to making people listen and I feel that if everyone who is “all in” on this awareness thing can formulate something that works for them we’ll get so many more people to listen and attempt to understand. Hell, we might even be able to get people to want to go out and educate themselves on this subject *gasp….I KNOWWWWWWWWWWW.

Opening rant: CONCLUDED…. continue….

When I first got diagnosed I had absolutely no idea where to start with any of this. I didn’t know how to talk to people about it or how to explain what I had..mostly because I was brand new at it and had no idea what the hell I was talking about. I knew that people had to learn what this whole bladder condition was and either accept me with it or not but I didn’t know where the starting line began. I emailed Jill Osborne from the IC network (I wonder if she remembers that email from all those years ago…2005 I think it was) and asked her what I should be doing as a newly diagnosed patient who wanted to raise awareness. She told me to sit down with a pen and paper and figure out what I didn’t have 5 years ago that could’ve helped me now to make this journey easier. I did. I started writing and I haven’t really stopped since. Well, except for my random hiatus’ that I like to take. But, the point is that it’s never been easy to keep going and lord knows that the asshole people of this community don’t make things any less discouraging or challenging. The catch of the whole thing is that you keep going because you’re confident in the words that spew out of your mouths….confident in knowing that no matter what you’re still you…confident that if they don’t understand it, that’s their loss and it just means you have to try different ways to make them get it. It shouldn’t ever mean giving up on trying to educate people on what it is we deal with. I made a decision back then that no matter what I would believe in what I was saying %100 because ultimately, at the end of it all no one is going to believe a damn word of what you say unless you believe it as well. That is a hard thing to commit to. But it can be done.

I know how frustrating it is when you spill your story out to someone and they say the dreaded “oh, but you don’t look sick” …I know…but that doesn’t mean there’s no hope in making them get it. That doesn’t mean that they’re a lost cause and you need to chalk them onto the “thinks I’m lying about my illness” board. It just means you have to change your tactics and your strategy.

It’s all in the delivery.

The amount of acceptance this whole condition gets is based on our marketing of it.

Now some of you may say that this is ridiculous. That we’re not selling anything…that is totally untrue. We are, in fact, selling our stories. We are selling the facts about this conditions. We are asking that people stop what they’re doing and listen to what we have to say about our pain levels. We are proposing that people hand over their money to go towards research so that one day we may have a cure and when looked upon in that sense…everything about this has to do with marketing.

In my opinion, marketing truly has to begin with one person. There are thousands of marketing firms here in the city and although there are hundreds of marketers that work at each, most of the time it is one or two people that come up with that million dollar slogan. It’s one person that sits at home at night and figures out that geico should have a gecko as their mascot. Then they take it to the board…it gets approved..and it gets distributed to the masses and we all watch it a bazillion times trying to figure out if we hate him or think he’s adorable. Point is, we watch it..and I bet we can all see his silly lil’ green face and say exactly what company he represents. Many amazing marketing ideas come from the mind of one person. Why? Because an idea has to start somewhere…and where better to start an idea than sitting home on your ass trying not to run to the bathroom a gazillion times? Well, in our case anyway. lol . I used to keep a pad and paper in the bathroom…seriously. Because back in the day when I spent so much time in there I had ideas for days. I used to try to think of anything but how bad I had to pee and dear god, the things that my mind came up with. Some of those things you’ve seen and some I’m sure I’ve hidden away somewhere because they were totally bonkers. Regardless, one person’s mind can do amazing things. Just as one person can accomplish amazing things and just as one community can learn to educate another community on the issues that are faced on a daily. Everything starts with one. Just sayin..

I hear so many of you say that you want to quit because people don’t get it. “There aren’t enough people who care to make a difference” and ” I can’t do it on my own”. This whole way of thinking has got to change. There are so many “one’s” that have made a difference on so many different topics in this ginormous world. SO many. So many my brain can’t even process how many. We are no different. You have to realize that instant gratification is never going to happen in a situation like this and if it does it’s rare. Trying to educate a world who knows nothing of this condition is not going to happen overnight. It’s a gradual climb. And an annoying climb up an icy slope in bare feet at that. It’s difficult. It’s hard. It’s all about how one person delivers this message to whoever they’re trying to talk to. Not everyone is going to accept sitting there and listening to you talk about how many times you have to pee a day. They just won’t be open minded enough to get it. Some will. Some won’t. If the one’s who won’t are still sitting there..change your delivery. Instead of making it about your story tell a different story that you think they can relate to. I’ve found that most times it changes the close mindedness and sometimes it doesn’t. Sometimes there’s no changing someone’s mind. But most times you can grasp an audiences attention by..well…knowing your audience.

I guess my whole point is that it doesn’t matter if you feel like it’s just you against the non-IC world. It truly doesn’t matter. It makes it more difficult. It makes it harder. It is definitely more tiresome but at the end of the day if it’s just you in your small town walking around handing out flyers then that’s you making a difference.

Picture it as a ripple in the water. If one person gets one person to educate themselves on what IC does to a lifeform then maybe that one person will tell one other person and someone who talked to that one person finally goes to the doctor because she’s had these symptoms for years and never knew what it was. Maybe just one person talking can inevitably get many “ones” some help. See where I’m going with this?

It’s hard and frustrating. But if you keep that in mind….think of the difference you all can make….even if it’s just you. Even if it’s just one.

Hell, if you add up enough one’s you eventually get gamatrillions of ones. And that’s a lot. For real.

A Vlog by yours truly explaining why I’m asking everyone to dye or turn (whichever way you choose) their hair blue in honor of Interstitial Cystitis Awareness month. Why blue? Well, because turquoise/blue is our color and what better way to grab the public’s attention than by doing something drastic and changing your hair color to a nice shade of smurf? Watch the video! Feel free to ask any questions.

I decided that although I love writing, I do better at talking. I ramble a lot but I get my point across. Most of the time IC patients reach out to each other through the internet, phone calls, emails, support groups, etc. These days it’s rare to go to an actual support group meeting because so many of us are dealing with our medical issues in our own bathrooms and screaming into pillows from the frustration in our own living rooms. I just wanted to personalize a bit…give people a chance to see that i’m more than just a face on a blog or another IC patient in a group. This is the first video blog so bare with me….it’ll get better as we go!